HOUGHTON - Huntar Gustafson appears to be a happy little boy but in reality, the 18-month-old is afflicted with a disorder so rare, it hasn't even been named yet.
"He has a tethered spinal cord," Huntar's aunt, Erica Ahola, said. "He's actually the third documented case in the United States and the ninth in the world."
Huntar, of Houghton, was born with a misplaced left hip and had to be supported with a harness. Later, doctors found a little bump on his lower back and he had to undergo various tests from which doctors determined he had a spinal disorder.
Doctors want to remove some vertebrae and work with the spinal cord so Huntar can avoid paralysis, which could cause a complete loss of muscle function.
"As far as we can tell, he doesn't feel pain," Ahola said of his disorder.
But because he's had this his whole life, Ahola said doctors say he could be used to it. All in all, it's hard to tell if it's painful for the toddler.
"It's been a roller coaster," she said. "But he's the happiest little guy and you would never know meeting him that he has this disorder.
Right now, the family is looking into different options to raise funds to pay for a $150,000 surgery to correct Huntar's disease before the child grows any more, which may hinder his development and cause a lifetime of issues.
"(Doctors) are saying that even if he grows an inch taller than he is now, he has a huge possibility of paralysis," Ahola said.
Huntar was referred to the Shriner's Hospital in Minnesota, and the University of Minnesota Children's Hospital in Fairview is the only hospital in the U.S. that has performed this surgery previously, she said.
For the surgery, Huntar will have to be put into an induced coma for about a week because he has to lay still on his stomach, Ahola said.
"After that, they'll move him over to the Shriner's Hospital where he'd be able to leave after a couple of weeks," she said.
Because of state boundaries with health insurance, Ahola said the family will not be receiving the financial help needed for Huntar to have his surgery.
As medical bills rack up, the family has been open to holding different fundraisers to help ease medical costs. A pancake breakfast was held a few weeks ago where the family raised about $200 to go toward medical costs. A yard sale is being held in Marquette this weekend for Huntar, also.
"We're looking to some options right now," she said. "We hope to hold a yard sale here too. We have to get them done quickly before he grows too much."
To learn more about Huntar and to donate to the cause, visit huntargustafson.blogspot.com/. A Facebook group, "Help Huntar! Remove State Boundries for Health Coverage," has also been set for Huntar and www.facebook.com/profile.php?id=40609278&v=wall&story_fbid=122540267775909#!/group.php?gid=117528221617843.
Stacey Kukkonen can be reached at firstname.lastname@example.org.